• Are there any other folks on the site here with an autoimmune diseasein addition to their Cancer?

    Asked by AlizaMLS on Monday, March 18, 2013

    Are there any other folks on the site here with an autoimmune diseasein addition to their Cancer?

    I was/am a diagnosed Lupus patient before being diagnosed with BC. Are there any other folks on the site who have autoimmune illnesses besides cancer (Lupus, sjogren's, fibromyalgia, ulcerative colitis, MS. Krohn's Disease, etc.). Tell if you wish how you manage both your conditions, what trials you've had handling both. Please don't reply if you're not in this group (unless you're the caregiver of such a patient). Thanks!!

    3 Answers from the Community

    • AlizaMLS's Avatar

      I'll answer my question first. As I mentioned above, I'm a Lupus patient (diagnosed about 20 years ago [took the docs about 2 years to figure out what was wrong with me - they didn't know what was wrong - I had night sweats, low grade fevers, aches and pains]. They thought maybe HIV, Lyme disease or leukemia. Lupus was about the last thing I tested for. My PCP (a cardiologist at the time had me see a Rheumatologist to confirm [I went to Hospital for Joint Disease in NYC {part of NYU Med}]. I was and have been lucky with my Lupus, even with flares because I haven't needed (or wanted) to go on prednisone. I was on it once for about a week and it made me miserably unhappy (although I could move like a ballerina). I've been takiing 400 mg. placquienil since I saw my 1st rheumatologist and that helps the fatigue, but I forget how much unless I go off it. The placquenil (which is an anti-malrial that helps fatigue [it's a form of quinine]), is a mild form of chemotherapy and lowers your white count.

      Currently, my white count is pretty low, (after two post op infections following my mastefctomy in Dec., plus a bout of the flu accompanying my 2nd post-op infection (not much fun). I'm the only person I know who has two Hematologist/Oncologists treating them. My Oncologist at Sloan Kettering treats me strictly for cancer and can practice Hematology of course but hasn't for years, so she prefers I see the fellow who's been seeing me as a Hematologist for my Lupus (who also practices Oncology (who wants me to be treated for my Cancer at Sloan Kettering)...;) It works, but it's kind of funny. I currently need to make an apppointment to see my Rheumatologist to have her see my counts and tell her my left knee feels like I'm Quarterbacking for the Giants and see if I can get a synvisc injection and get a refill for placquenil. My Hematologist has promised to treaat me through placquenil so I don't have a Lupus flare (if possible) meaning that I can stay on my placquenil and still get a neupogen shot if necessary to raise my white count.

      I'm fortunate with my BC to be Cancer free for 3 months and I was blessed not to need chemo after my mastectomy because they ran Oncotype genetic testing on my tumor which showed a very low risk of recurrence. I am however exhausted from all of the above - Lupus, the 2 post op infections, the flu and some low counts as far as WBC, RBC, and platelets. I self inject B-12 because my Lupus did something strange and for some reason I can't absorb B-12 from food or vitamins. It helps my energy level.

      over 7 years ago
    • SandiD's Avatar

      I have some lingering issues after surgery for early colon cancer that made BC treatment a but more uncomfortable, but I managed. I have osteoporosis and severe Fibro too. The Aromatase Inhibitor really aggravates the pain and stiffness but I manage. I take a Tramadol every morning when I am most stiff and sore and take Tylenol as needed. I have tried other meds for pain, but they bother my gut too bad. Honestly, what helps the most is to get some exercise. Some days I really don't want to, but I always feel better for it. Even if it is just gentle stretching and housework, or walking my dog, I force myself. I see a Rheumatologist who tries to help me and gives me something to sleep. You will be ok, just be honest with your doctor about everything you deal with. Good luck!

      over 7 years ago
    • whisper's Avatar

      I have autoimmune poly-peripheral neuropathy, just means it also affects my autonomic systems: such as blood pressure abiblity to swallow and digest food. I have been fighting this for almost 20 years and the last 7 have actually been pretty good. Even learned how to walk again. Then Feb. 1 2013 formal news Stage 3 BC. The nueruapthy of course has caused a lot of problems after mastectomy and lymph node removal. Even my port cath is aggravated by the neuroapthy. My first chemo was tuesday I go again 2 weeks from then. Not sure how the different chemo drugs are going to work with neuro but I guess my last type of chemo drug that I will start in a few weeks can cause a lot of neuropathy problems not looking forward to that one.
      Good luck

      over 7 years ago

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